Compassionate, informed advice about healthcare decision making

Posts Tagged ‘hospice’

Does Hospice Hasten Death? Some say “yes”— Most say “no”

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Boy, was I blindsided?

I posted a quote from a study that examined the general public’s understanding of hospice on my Hard Choices for Loving People Facebook page. 30% of the respondents said they felt hospice hastens death. My Facebook post got hundreds of likes and comments, a lot of traffic for my humble page. I had no idea this would engender such a strong response.

“This morphine is wonderful”

Misconceptions can be based on misconceptions. When people hear that a friend is receiving morphine, they automatically think death is near. Not necessarily. Because of this close association of morphine with death and the association of getting on morphine in hospice, many assume that’s what hospice does — hastens death. Not so. Morphine controls pain and relaxes breathing.

I had an elderly patient once who was dying of respiratory failure. She was so short of breath that it was a major chore for her to move from her bed to a chair. She got great relief from morphine which she took for months before dying. She told me once, “I’ve always been opposed to drugs, but this morphine is wonderful.”

The coincidence of death after morphine

Many of the respondents to my post who agreed that “hospice hastens death” told stories of family members going on hospice and dying soon after. Why should this surprise us? Hospice requires that a patient is within six months of dying, although the average patient is only on hospice for two weeks.

I am sure it is just a coincidence that a patient receives a dose of morphine and dies shortly after. The family then thinks, “she died because they gave her morphine.” She did not. She was on hospice because she was dying, and she just happened to take her last breath after taking morphine.

No incentive for a hospice to hasten death

It makes no sense that hospice would want to hasten a patient’s death. The more days the patient is on hospice, the more reimbursement the hospice receives. It is totally against their financial interest to hasten death.

Hospices also want to make sure their patients are as pain-free as possible. Families of hospice patients fill out surveys after the death of their person. They rate the hospice on pain control, among other items.

So, yes, hospices use morphine to keep patients comfortable, not hasten death. They want to have the patient as long as a natural dying process will allow, and they want favorable survey results.

The research is clear; patients live longer on hospice

Many studies confirm that hospice patients live longer than nonhospice patients suffering from the same disease. One study looked at dementia patients. On average, the patients on hospice lived longer than those who never entered a hospice program.

Another study looked at five different kinds of cancer and congestive heart failure. Once again, the patients who were under hospice care lived longer than the nonhospice patients.

So, rest easy. If you have a life-limiting illness and want to live longer with a better quality of life, go into hospice as soon as possible.

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Chaplain Hank Dunn is the author of Hard Choices for Loving People: CPR, Feeding Tubes, Palliative Care, Comfort Measures and the Patient with a Serious Illness and Light in the Shadows. Together they have sold over 4 million copies. You can purchase his books at hankdunn.com or on Amazon.

On The Other Hand, “I don’t want to die at home.”

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Conventional wisdom says, “A good death is at home with my family gathered around me.”

An alternative view says, “I don’t want to die at home.”

How many times have we seen in an obituary, “He died peacefully at home with his family gathered around him.” Families wear this as a badge of honor. They provided the best of care and met the patient’s wishes to remain at home.

Home is generally considered the preferred place to die. For the first time in generations, more people are dying at home than in the hospital*. I have seen some studies that consider dying at home, as opposed to dying in the hospital, as a “good outcome.”

“Not so fast, my friend.”

“Not so fast, my friend,” as Lee Corso would say on College Game Day. Many people die away from home by choice. As I said in a previous blog, there are some people who just feel more comfortable dying in the hospital. Some families do not want to live in a home where a family member died.

I have a friend who is in his 70s and his preference is to die away from home. He is in a second marriage, this time to a widow. He does not want to put his wife through the caregiving burden again.

Besides, he told me, he has so far paid for long term care insurance for years and would hate for all that money to go to waste. With the insurance, he is prepared financially to live for years in assisted living or a nursing home. “I will not put her through that again,” he said.

*See a recent article in the New England Journal of Medicine, “Where Americans Die — Is There Really ‘No Place Like Home’?”

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Chaplain Hank Dunn is the author of Hard Choices for Loving People: CPR, Feeding Tubes, Palliative Care, Comfort Measures and the Patient with a Serious Illness and Light in the Shadows. Together they have sold over 4 million copies. You can purchase his books at hankdunn.com or on Amazon.

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Cover Photo by Zac Gudakov on Unsplash

Not much has changed in 40 years — My radio interview

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Are people more willing to have a conversation about end-of-life planning today than they were in the 1980s? That was Jeanne McCusker’s opening question as she interviewed me for her weekly program, “A Graceful Life.” What was I to say?

Jean McCusker, host of “A Graceful Life”

I had to admit, “Not much has changed.”

Why? Why, in almost 40 years, has not much changed about end-of-life conversations?

Dying is very personal. You only die once. Although you may get some experience making healthcare decisions for others, like your parents, that is still limited experience. Every end of life is unique. We may have made great strides toward facilitating more peaceful deaths, but each person still faces their death anew.

Hospice and advance directives have not guaranteed peaceful deaths

I do think healthcare professionals and healthcare systems are better today. Take hospice, for example. Medicare started the hospice benefit in 1982. Since then, hospices have grown exponentially. Now, almost everyone knows stories of good hospice deaths. About half of the people who die on Medicare receive hospice care.

Sadly, if you dig down into those numbers, over one-quarter of those on hospice were there less than a week. In other words, they waited until the “last minute” to receive this vital service. Hospice professionals know it is hard to provide the best comfort-focused end-of-life care in less than a week.

Another change in the last 40 years has been the increased use of advance directive documents like living wills and durable powers of attorney for healthcare. About half the adult population now has such papers.

Again, all this paper has not improved how well we die. An important article in JAMA last fall questioned whether the emphasis on these documents has led to improvements in end-of-life care. Healthcare professionals might want to listen to a recent GeriPal podcast on this very topic. Just having a piece of paper does not guarantee a peaceful death.

I came to the end of the interview repeating what I often say, “End-of-life decisions, for patients and families, are mainly emotional and spiritual. The big question is, ‘Can I let go?’” THAT truth has not changed. Letting go and letting be can still be difficult.

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Chaplain Hank Dunn is the author of Hard Choices for Loving People: CPR, Feeding Tubes, Palliative Care, Comfort Measures and the Patient with a Serious Illness and Light in the Shadows. Together they have sold over 4 million copies. You can purchase his books at hankdunn.com or on Amazon.

 

Having a “Happy Death” — How weird is THAT?

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Recently, Roman Catholic Pope Francis referred to Saint Joseph as the “patron of a happy death.” Here’s the problem: I usually associate happiness with smiles, laughter, and a sense of the lightness of life. “Happy” and “death” are hard for me to connect.

The Pope stood before a General Audience and introduced the phrase “happy death” in the first words he spoke about Joseph (you know, Joseph, the husband of Mary and earthly father of Jesus). He never again used the word “happy” in his brief remarks.

What is it about the word “happy”? Why is it so hard to associate it with death and dying?

I want to drop off a “happy”

Three years ago, we moved to the Deep South in the hill country of Oxford, Mississippi. Here we might get a call from a friend, “Y’all going to be home? I want to drop off a happy.” That means she’s going to bring over a gift. It might be fresh-made pimento cheese or a potted plant. Let me tell you — in Oxford, if you tell someone you are feeling sick, you will get more hospitality than you can imagine. People will be dropping off happys all day.

Then, of course, “happy” is enshrined in the Declaration of Independence with the words, “inalienable rights of life, liberty and the pursuit of happiness.” An earlier draft had the words “pursuit of property.” Even today, many people assume accumulating worldly treasures and wealth will make you happy. From surveys, we find out the very wealthy are not any happier than those of more modest means. Once you move out of poverty into a stable financial situation, you are as happy as you will get.

Jesus and Mary as the “hospice team”

So how did Pope Francis associate Joseph with a happy death? As far as we know, he died while Jesus still lived at home before starting his ministry. The assumption is that the dying Joseph was cared for by Jesus and Mary. They were on his “hospice team,” so to speak. I guess you could also assume you’d have a happy death having Jesus and Mary as your caregivers.

Then Pope Francis goes on to discourage prolonging dying with overtreatment. He encourages relieving suffering with pain medications and mentions palliative care. These are elements of what we today call a “good death.”

Maybe not a “happy” death but a “good” death

Recently, I wrote a blog and shot a brief video where I explored the components of a good death in the 19thcentury. For obvious reasons, the elements of a good death in first-century Palestine, on an American Civil War battlefield, and today in a hospital have changed. We may have more tools now to control pain, but at the same time, dying can be unnecessarily prolonged by being hooked up to machines.

It doesn’t matter whether you call it “happy death” or “good death.” The hope is that we can have the best death we could imagine. Most likely, that will involve having family gathered around, being free of pain, and in a place of our choosing.

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Chaplain Hank Dunn is the author of Hard Choices for Loving People: CPR, Feeding Tubes, Palliative Care, Comfort Measures and the Patient with a Serious Illness and Light in the Shadows. Together they have sold over 4 million copies. You can purchase his books at hankdunn.com or on Amazon.

“Mrs. Smith, here is your pain pill.” She Lied

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Is it ever okay to lie? Can lying be helpful at times?

Let me think about that.

I was sitting at the nurse’s station in the nursing home where I was chaplain. The most competent and compassionate charge nurse pulled a pill out of someone’s med drawer and said, “I know this is unethical, but I HAVE to do something for this patient.”

She was in what we call “moral distress”—being forced to do something she knew, in most circumstances, was wrong. The patient was in increasing amounts of pain, and the doctor had prescribed a narcotic we did not have in our in-house pharmacy. Delivery could take hours, and the patient was often on the call bell begging for relief from her pain.

So, the nurse rummaged through other patients’ meds and found a vitamin pill. She took the pill to the suffering patient and said, “Mrs. Smith, here is your pain pill.” Within minutes the pain was gone. This is the well-known and much-studied “placebo effect.” It is real, and it provided this patient what she needed.

Medical ethicist Howard Brody has called the placebo, “the lie that heals.”

I just finished reading two books that explore the placebo effect. One is Useful Delusions: The Power and Paradox of the Self-Deceiving Brain by Shankar Vedantam and Bill Mesler. The other is Suggestible You: The Curious Science of Your Brain’s Ability to Deceive, Transform and Heal, by Erik Vance.

“The placebo effect is often described as the effect of mind over matter. But it is actually about something much more powerful: the power of the drama and rituals embedded in the practice of medicine—a theater that involves (often at an unconscious level) deception on the part of the physician [or the nurse] and self-deception on the part of the patient.” (from Useful Delusions)

And this bit of theater acted out by this nurse unlocked the patient’s “Inner Pharmacy” in the words of Eric Vance. He goes on:

“Chronic pain responds exceptionally well to placebos. In fact, pain might be the signature placebo-prone condition in the world today.… Humans do have a form of homemade opioids called endorphins—our own little hidden opium dens tucked away in our brains.… Pain placebos work because the brain self-medicates with opioid drugs.”

The theater that unlocks the placebo effect

How does this work? Vance writes, “Two complementary ideas—suggestion and expectation—are at the heart of unlocking your internal medicine cabinet.” The patient expected to receive relief from the nurse giving her a pill. The nurse suggested this was the pill that was going to bring that relief. Bada boom, bada bing—the pain was gone.

The nurse played her role in the theater. She dressed like the nurse she was. She brought in the pill as she had done scores of times before. She spoke her line, “Here is your pain pill.” The patient responded to all that the acting suggested and expected to find relief. She got that relief from an opioid released by her own brain.

I’ll give the last word to George Costanza from Seinfield: “It’s not a lie if you believe it.”

“You can flunk out of hospice.”

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I am the last person they want to meet. Actually, they would rather not meet me any time. Hospice chaplain.

I remember walking into a nursing home room to meet a new hospice patient. He was in his 60s and had a brain tumor. I gave him a friendly smile and said, “I’m Hank, the chaplain from hospice.”

With a terrified look he gasped, “Oh God. No!”

I sat down and asked, “What do you mean by that?”

“I don’t want to die.” A very honest and understandable answer.

He was so disturbed by my presence I decided to spend this first visit just getting acquainted and, perhaps, lower his anxiety a little. I told him just because you are in hospice you don’t have to die. I said, “You can flunk out of hospice.” It doesn’t happen often but occasionally people actually improve and no longer have a life expectancy of six months or less, which is the prognosis needed to qualify for hospice care.

It is very normal to fear death

Sadly, “I don’t want to die,” were among the last words I heard him say. I made several more visits to see him but the tumor creeping through his brain took away his ability to speak after that initial conversation. I so wanted to explore what was behind his fear of death. It is very normal to fear death but each patient has their own unique spin on it.

There are many obstacles hindering people from getting into hospice care but I think getting over our normal resistance to accepting a terminal diagnosis is a major hurdle. Here is how the logic goes … “Hospice means I am dying. … I don’t want to die. … Therefore, I won’t go into hospice and not die.” Truth is most people die outside of hospice care anyway so staying away from hospice does not keep one alive.

They are going to die with or without hospice

I was inspired to write about admission into hospice because a recent issue of The Journal of the American Medical Association (JAMA) has a “Patient Page” on the topic. JAMA is mostly for physicians and other healthcare professionals but they offer “patient pages” as a resource for lay persons. You can download a one page summary about hospice free from their website.

I advise medical personnel outside of hospice to emphasize the positive aspects of hospice as they counsel patients about end-of-life care. Hospice can help people stay in their own home and provide help for the caregivers. Medical equipment and many other expenses are covered under hospice. You have pain control experts available to offer comfort. Emotional and spiritual concerns are addressed with social workers and chaplains.

Sure. The patient is seriously ill and will probably die in the near future. But they are going to do that with or without hospice.

Illustration by Maria Fabrizio

Hospice Care Too Long?

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Is hospice care costing our nation too much because some providers are caring for patients who are not terminally ill?

That is the question addressed in research conducted by the Kaiser Family Foundation and the New York Times and published in the June 28,, 2011 edition of the Times. Hospice programs are reimbursed by Medicare a set amount each day they care for a patient. The amount depends on services required for the average patient with a particular terminal condition. For a patient to qualify for hospice care a physician has to certify that, in all likelihood, the patient will probably die in six months or less. If the patient is still alive after six months then the physician can recertify that six-month or less prognosis.

People staying too long in hospice care? The average length of stay in hospice care from admission until death is 17 days. That means when you add the number of total days Medicare pays for and divide by the number of patients receiving hospice care the average is 17 days. Whether or not hospice providers are taking advantage of the system by seeking out patients who will likely live longer is a question beyond my expertise.

Seventeen days is not a long time

My interest in this study is what is implied about the other end of this equation. With the average stay in hospice of 17 days and if some patients are inappropriate because they are likely to live beyond the six-month prognosis, then there are a heck of a lot patients who are “too-short-stay.” Seventeen days is not a long time when the original intent of the hospice Medicare benefit was to provide quality end-of-life care in the last six months of life.

The short-stay patients (one to three days, for example) are the hardest to give the highest quality care. These patients obviously have very advanced diseases and either the patient, family, or physician waited until the last minute to opt for hospice care. So you have a patient and family with the greatest need and only a day or two for the hospice to provide for their needs.

Turns out, it actually is very expensive for a hospice to get all the services in place. Without going into the details too much, a lot of staff time is needed to admit a new hospice patient such as setting up medical equipment in the home, buying medications, completing paperwork, and other administrative costs. But the hospice is reimbursed at the daily rate that is much less than what they actually have to spend. They lose money on these short-stay patients. They are glad to provide this service and can do it because they know other patients will be in the program longer and thus they can recover some of those costs.

These late-referrals have great physical, emotional, and spiritual needs.

These late-referral patients and their families have great physical, emotional, and spiritual needs. Dying three days after admission means, most likely, they just accepted the terminal condition of the patient. Perhaps they were in denial and hoping for a cure. Their hopes have been dashed and the patient is in the most frail condition. They look to hospice to “make it better.” Not provide a cure, but to make the death as peaceful and pain-free as possible.

My experience, which makes this purely anecdotal, is that occasionally hospices are unable to provide the quality care just because of the press of time. Perhaps, they couldn’t get the pain under control immediately or emotional and spiritual needs were left unmet. So, at times, you have an angry family because their and the patient’s needs were not met. From the hospice program’s viewpoint it was impossible to provide for these needs on such short notice. And the hospice makes the least amount of money from these patients. I have a theorem for this situation. It goes like this:

“The amount of anger and hostility of a family directed toward hospice is inversely proportional to the amount of financial reimbursement the hospice receives.”

Yes, perhaps some patients are staying in hospice care too long. I will leave that for others to sort out. But I know far too many are not in hospice care long enough. I am not sure how we get individual patients and families to seek hospice care sooner. Generally, our health care system focuses on cure (most often appropriately) rather than comfort and quality of life.

My wish would be that people would make that switch sooner from cure to comfort care only.

Feeling Guilty Over NOT Inserting a Feeding Tube? Please Don’t

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Is failing to put a feeding tube in a dying Alzheimer’s patient starving her to death?

The short answer is no.

That basically was the question posed to me by the daughter of one such patient two months ago. Her mother had died four weeks earlier. She had read my book Hard Choices for Loving People for the first time seven years ago. That was four years after her mom had been diagnosed with Alzheimer’s Disease. So, for eleven years her mother was on that long, slow decline toward her final days. Her death came after a stay in the hospital when the family agreed with the physician’s recommendation to provide comfort care only and not insert a feeding tube.

In the months leading up to the hospitalization this daughter spent five to six hours every day at the nursing home helping with her mother’s care. Most telling for me, it sometimes took two hours to feed her mother. This is so common for the end of dementia patients like this mother. They choke and cough in an effort to clear their airway. Occasionally, these eating difficulties lead to pneumonia. Finally, these patients just lose the ability to swallow.

As difficult as it can be, studies have shown that these hard-to-feed patients can be successfully and safely fed. Even so, when all efforts at careful hand feeding fail, it is a sign that the last days of a patient’s life have arrived.

Feeding tubes do not add one day to the patients lifespan

The daughter went on in her e-mail to me: “Since that time [of her death], I have felt extremely guilty. All my sisters still feel we did the right thing by following the wishes Mama expressed in her living will, but I struggled, and still struggle, as the living will she signed was 14 years ago. Mama may not have lived very long if she had a feeding tube but, then again, it may have given her years of life since I was with her so much of the time to ensure she got good care.”

I know this is hard but the research is clear. Feeding tubes do not add one day to the lifespan of advanced dementia patients like this mother. From all I can tell from this correspondence this patient did get good care. Comfort care, palliative care, and hospice care are quite appropriate for advanced dementia patients. Give them ice chips or sponge swabs dipped in water to quench their thirst. Give them a loving touch and spiritual support. There are a great many measures we can do to ease the suffering of an Alzheimer’s patient’s last days. Inserting a feeding tube is not one of them.

Photo by Ben White, Unsplash 

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